On my heart, chainmail

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When I first started having episodes again — confirming that me and my doctor’s original hope that a period of being medicated would break the cycle happening with my immune system was not going to work — it was devastating. I felt betrayed by my body and I wanted to punish it.

This is not a new phenomenon for me. Between the ages of 13 and 26, I committed various self-harming acts against myself. Cutting, burning, binge drinking, not eating, purging, unprotected sex with strangers, and so on. It’s not that I felt sorry for myself so much as I was trying to find a way to exist. It’s difficult to explain that sometimes you might cut yourself in small, controlled ways just to prevent yourself from slashing your wrists.

I have never been ashamed of my scars because I know that, for better or worse, it was how I survived.

People learn new ways to survive all the time.

Almost immediately following the realization that I was going to keep having the episodes, I found that I didn’t want to eat. Smug satisfaction filled me when I portioned out very limited and specific amounts of food that I would eat in a given day, mostly to prevent me from being sick or drawing attention to myself. If my stomach revolted, I inwardly scowled. You don’t deserve to eat! A cold rage burned in my bones. I didn’t care about losing weight or anything like that. I just wanted to punish my body.

I wanted the hunger to remind me to fight.

Then that determination shifted from day to day. Sometimes riding my bike outweighed heavily restricted eating, or if my husband guiltily suggested that we splurge on a “fancy” coffee. It became difficult to predict how I would feel from moment to moment, so I followed that current and observed myself with bemused detachment. Part of me hoped it would escalate. That I could stop pretending to “handle it well”.

One day after a lunch date with friends — coconut veg soup, water — it occurred to me that I was engaging in thoughts and behaviors that mimicked previous eras of believing myself to be completely out of control, crazy*, and damaged despite the fact that those things are not true about me.

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I feel intensely. Some moments are suffocating, they’re too heavy. Something small has to come forward to clear the air.

bike ride
a long walk
a perfectly brewed cup of Earl Grey
the way heavy whipping cream billows seductively when poured into black coffee
a middle of the day text from R asking how my day’s been so far
going to an art exhibition downtown
a surprise gift from a dear friend
stitching while enjoying an audiobook from the library
writing for small jobs and writing for myself
weather warm enough to enjoy an evening walk and an ice cream
crossing a line through completed chores on my list
a satisfying meal.

Moment to moment still feels uncertain, despite the fact that I eat pretty consistently now. I wrote most of this a week ago, but I feel reluctant to share it. What if I’m not done yet? What if I want to skip meals? What if I need to lie about eating and a loved one is suspicious? Most of the time, though, I realize that the small things are collectively helping me view myself differently.

Maybe I don’t need this secret. Maybe I don’t need a back up plan.

Yesterday my husband and I went for a bike ride, 10.2 miles to and from a local trail. I wanted to keep going, but we both had things to do that required us to go back home. It’s not just the cycling that makes me want to keep going, it’s the trees and the air and the wild flowers. It’s the fact that every time I feel surprised to be here.

I still want to fight. I just want the fight to go down differently. I want to triumph, not just survive.

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* The “crazy” I refer to here is the popular expression of female insanity. The madwoman in the attic. Gaslighting. Etc. In general, the traits I listed are meant to be regarded hyperbolically and in no way as a fair description of people struggling with self-harming behaviors.

Typically human of me

 

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I’m not sure how to talk about this because saying, “I’m disabled” doesn’t quite sound right. I am disabled, but there’s just something so heavy and restrictive about that statement, so final.

There’s nothing final about my experience.

My favorite part about riding my bike is the sense of autonomy I feel. For brief moments I look down at my legs and marvel at carrying myself miles away, up hills, down busy streets, fulfilling my own tasks. I am aware of the risks, but I feel confident that I could cope with those situations, and the confidence outweighing the fear makes me feel like I am the wind itself.

The first time I set out alone on my bike it was raining and cold. The house was empty with my husband and housemate each at their respective jobs. First I felt paralyzed with sadness, then I felt enraged by that paralysis. It felt like a poison. As I looked out the window trying desperately to think of what to do, I remembered how I felt days ago when my husband and I went for a bike ride that ended up being about 14 miles because I didn’t want to stop. I remembered the rage that kept building up and then dissipating with the next mile. I remembered how jubilantly I felt about my body’s power and ability.

As soon as I started pedaling, I knew I had made a good decision. The rain soaked me and my glasses fogged up. I almost cried several times, from equal parts sadness and gratitude.

I don’t have chronic pain. I have not lost any of my limbs. My hearing, vision, and sense of smell are all decent. I am not constantly sick from medical treatments. My body is not rapidly deteriorating under the burden of disease or illness. And even with those realities, people still do amazing things. Everyday.

Moments feel small to me lately. The giants have climbed back up the stalk and my house is not under threat of being smashed. Not right now. On a lovely Saturday afternoon my husband and I rode our bikes downtown to Atlantic Ale House for Noli tacos and beer. Others had the same idea, their bikes parked across from the cars while they congregated outside around picnic tables, leashed puppies, and cornhole boards. AAH is a small, new establishment, reflective of Johnson City’s development downtown. We were pleased to find that it’s style in no way points to a lack of substance. Our beers were delicious and I tried to make myself sip slowly while waiting for our tacos.

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R noted that just across the road are soup kitchens, low income housing, and for brief periods of time before they’re forced to disperse the occasional shanty town. Our city is not stranger than other cities in that signs of financial disparity are everywhere, but there is the peculiar balancing act of still feeling you have access to so much from below the poverty line without lying to yourself. To appreciate the wealth of a cold porter and fish tacos in the sunshine because there is this pleasure to be had for now.

I am starting to believe that our smallness is our greatest strength when we can embrace it. Especially combined with the fact that we’re so much bigger on the inside.